"I walk a lonely road/The only one that I have ever known/Don't know where it goes/But it's home to me and I walk alone". Inflammatory Bowel Disease (IBD) is a lonely disease. Nobody talks about it. It's not right to discuss what takes place in the bathroom or the stuff that our body does. But if we don't talk about it, how can we raise awareness? How can we push pharmaceutical companies for better treatments? How do we urge researchers to find a cure for this disease? Let's face it, the main symptom of IBD involves the gastro-intestinal tract and it isn't pretty. When I was first diagnosed with this disease back in July 2012, I was VERY sick. I was so sick that the doctors were concerned that I might perforate my colon. We tried everything. At one point I was taking;
a strong dose of prednisone - a steroid.
Remicade - a biological medication used for a variety of autoimmune diseases like Crohn's
Methotrexate - a chemotherapy agent to suppress immune system function
Mesalamine - another medication for inflammatory disorders
Lansoprazole - to help fight against acid production
Zofran - for vomiting
the antibiotics Flagyl and Vancomycin - they work on the gut microbiota and prevent/treat infections
Not that great of a breakfast. It was lonely when treatment after treatment would not help to get me to remission. I saw other kids coming in to hospital after me, getting better and leaving before me. You can easily wonder whether you're ever going to be well enough to go again.
I've pretty much exhausted my treatment options which is an extremely lonely place to be in. The biologics Remicade and Humira are two of the most often used medications when all of the earlier medications have failed. I've tried Remicade twice. The first time, I developed antibodies but the treatment wasn't working anyway. Then I lost my colon. The second time, I developed severe psoriasis that was painful and bleeding to the touch and covered 70-75% of my body. Humira covered my body in bruises to the point where my mom tells me that I looked like I got hit by a car and then run over by a bus. Now I'm on this medication Stelara, another form of a biologic which works on a different receptor in the body from the other biologics. It's been great for my skin, and for awhile we thought it was working for my Crohn's as well (research has been somewhat good on the use of Stelara for Crohn's), but for the past several weeks I've noticed more symptoms coming up again. I will be scheduled for another colonoscopy and endoscopy soon where we will look at how much it has or hasn't helped. If I am deemed to have "failed" this treatment... there's not too much left out there available to me. In fact, the only thing left might be applying to the government for special access to a medication called Entyvio which is being used with some success in the US. The medication is available to adults in Canada just not pediatrics.
Jacob's Healing Rooms is a place for kids to feel less alone, less "down", while they are receiving their IV treatments. It's a place of hope, encouragement and dreams. It's a place of love. Please support Jacob's Healing Rooms and help brighten the lives of other sick children.